[personal|cancer] Hope and despair

Yesterday was a particularly challenging day for reasons only tangentially connected to my cancer. Tomorrow I see my surgical oncologist, the pre-operative nurse practitioner for screening, and my therapist. (That makes for a half sick day from work right there.) Today I am in what will hopefully be a trough among the cavalcade of stress and woe.

One bright spot on yesterday was spending an hour with my dad over coffee. (Well, soda for him and hot chocolate for me, but the principle remains the same.) We don’t actually have a lot of one-on-one time, he and I, because I’m usually with the_child and/or Lisa Costello, and he is usually with my (step)mom. We talked a lot about the Acts of Whimsy fundraiser, and my forthcoming surgery, and the current state of affairs in the extended family.

Then he brought up my recent sharp negativity. Dad is a retired U.S. ambassador and a former Deputy Assistant Secretary of State [ wikipedia ], and is extremely diplomatic in both the metaphorical and literal senses of the term. He is careful how he phrases his thoughts, and he was very careful with me, saying that he and Mom were concerned about how upset I’ve been since the news of Ashcroft, my fourth tumor, broke. As the current family issues erupted about the same time, I have been emotionally and logistically overwhelmed literally every day for this past week and a half. (Keen-eyed observers of my blog may have noted zero writing time during what should have been my main writing window during this surgery break.)

If you know me at all, think about that. I’m so stressed out I can’t write, even though I’m no longer subjected to chemo-induced writer’s block. In over a decade of being a professional writer, I’ve never had writer’s block in the usual sense for more than a two or three days in a row. Until now.

My despair is showing through. In ways that are alarming my family. In ways that are probably undermining my own treatment course. Lisa Costello and I have spent time discussing this quite frankly. My therapist is very concerned. What I’ve said to both of them is that my day-to-day life is still a joy to me, but my sense of the future has retreated to a deep and profound negativity.

Even the amazing response to the Acts of Whimsy fundraiser hasn’t been enough to shake me out of this emotional pall.

Over the past few years, hope has been frankly poisonous to me. Every time I’ve started to have serious hope, I’ve been shot down by another round of cancer, another round of bad news, to the point where even proudly logical me has become immersed in that species of magical thinking that says, “If you hope, you’ll just lose what you hope for, so better to despair and have the potential to be pleasantly surprised, than to hope and be shot down yet again.” I can only stand to have my head pounded into the metaphorical concrete so many times, and I’m past my limit.

One of my longtime (i.e., pre-cancer) coping strategies for stressful events and situations is to “run to the edge”. In other words, I visualize what the worst possible outcome could be, and work backwards from there. This generally worked for me, because things rarely if ever came to the worst, and it allowed me to be pleasantly surprised even by relatively difficult outcomes. Under this rubric, if no one died or went to jail, I was doing okay.

The problem with applying that strategy to my cancer experience is that I have on a number of occasions experienced outcomes that were even more terrible than my envisioned worst possible outcome. The coping strategy has failed me through a combination of insufficient imagination on my part and overwhelming medical setbacks. I’ve painted myself into a corner.

Oncology is infested with what Barbara Ehrenreich calls “the cult of optimism“. The reality is that cancer sucks, and half the people who are diagnosed will die of it, many of them prematurely. (Bear in mind this includes all those relatively minor skin cancers that get zapped or frozen off in dermatologists’ offices every day — I don’t know the statistics for cancers internal to the body, but they are obviously much worse when you factor out melanomas and whatnot.) Yes, treatment outcomes in any area of medicine vary according to patient attitude, but as far as I can tell, this has a lot more to do with being an attentive, proactive patient who follows their treatment courses carefully and shares information with their doctor than it does with being a happy warrior.

While I am a very, very unhappy warrior, I am also a very proactive and engaged patient. Almost certainly annoyingly so, from my oncologists’ perspective. Though they are very professional about dealing with me, this is my life.

Right now, I’m really not capable of hope. Not in a large scale sense. If the whole genome sequencing of my tumor produces a new treatment direction, that may change. Otherwise, the trend of my illness is sharply unfavorable to me making any long term plans.

My despair, however, is poisoning the people around me. So apparently I must now put on my happy face for the sake of the people who love me, and whom I love. I’m not good at living lies, which at the moment this absolutely will be. But I’m not comfortable with the social aspects of my illness, either. No matter which way I turn, I’m doing something wrong.

Jay, I would be despairing even worse than you. I wouldn’t be writing a blog or novels or doing a film. I would be in bed and not moving. But I think you should not think of it as putting on a happy face, but picturing The Child’s face and focusing on it. And concentrate on what you want for her in the future — what you want her to remember about you if you die. She will have your fierce fight and honesty, which is great. But if you dial back some of the despair, for her and for her in the future, that would probably be good. Not that you need to get rid of all of it — not at all. That would be insane and The Child would know it was fake anyway. But if you can focus on her face when you’re in the depths of despair and bring yourself out of some of it, that might help. Again, I’m in awe of how courageous you are and know I would not be.

This whole tyranny of optimism coupled with the “If you despair or get angry at your cancer, it’s your own fault that you’re sick” attitude is as resilient as it is toxic. Yeah, blame cancer patients for not elegantly fading away. My very religious biological grandmother got this shit in the 1960s, because she apparently wasn’t positive enough to beat her cancer, even though by all accounts the woman was so positive she’d have made my teeth hurt had I ever known her. And this shit is still around.

like everyone, im concerned. ok, so dont write. live for today. how is working on your short-term mood living a lie? i posit it aint. i know it’s a cliche, but i been watching friends die too, and yeah, friend, i agree with you+dad both- Enjoy the day.

Jay: It is true in some ways that we are our jobs. Someday (and I hope it is many many years from now) your obit will include “Jay Lake, writer.” But that is not ALL you are. You do not owe your readers. Whatever time you need for yourself and your family is your own.

It’s true about hope and attitude. The research (and I’m an excellent methodologist) looks very clear that hope and positive attitude are only associated with better outcomes because without them people do not follow through with treatment and self care. There is no magic or bio-synergy or other woo nonsense at work. Thus, there is no “special” harm in allowing yourself to feel bad. Cancer sucks – you know this better than any of us. Being pissed or sad or whatever is authentic and real and none of that will affect your recovery as long as you keep doing the things you need to do for treatment.

How that works with the people around you is a tough nut to crack though. There can be a lot of guilt about being sick and how that affects our loved ones. My unsolicited advice (and tell me to F off anytime) is that although it is noble, and sometimes necessary, to put on a brave face, it’s good for you to alllow yourself to be the other things as well. They won’t like it. It will scare and upset them. They may need to grow into it, but most people can if they have to.

Jay, namesake, i cant stop thinking about what yure going through. such a powerful essay. maybe part of not wanting to hope is you need to do something else with the money raised, is that what youre thinking? like a college for the child, if that’s legal. because they were paying for whimsy, no? maybe this decision is what’s going on with you? i dont know. i cant advise but i do know that youre not, forgive me, trapped in the bathroom like you were. people said my 103 year old stepgrandma was “very morbid”. i didnt think so. she was just frank, people, nonbuddhists, just arent used to it. i think you have a right to look as far ahead or close ahead as you like, if you can be positive for this very momenr that can cheer those around you. watch comedies? you need a change, a break, whatever you need maybe it can be reconciled with what those around you need. here’s martin lither king his last speech, when he knew he was on a hitlist.. I wish you joy and wisdom http://www.youtube.com/watch?v=peISErA0keI&playnext=1&list=PL38EC2B16493DE957&feature=results_video

Okay, so let’s think about this for a moment. There’s no argument that circumstances have put you into that dark place so far that even the diffraction of light from the opening has diffused. That’s completely understandable given what’s been going on. But those close to you, while certainly living this right along with you, aren’t the ones who are enduring the chemical and genetic battle going on inside your body. They want to fix it — hells, we *all* want to fix it! — but there’s simply nothing physical they can do. They can’t go in and excise ever last cancer cell. They can’t concoct the witches’ brew of chemicals that will theoretically kill off the cancer before it kills off the rest of you. They can’t put up a barrier to prevent recurrence.

They’re scared, too. Scared for you. Scared for themselves. They want their Jay back in battery, not hurting, with a full measure of life. And the only tool they have right now is love for you. It’s that love that makes them dream up a whole bunch of dreadful ideas when they see you depressed and overwhelmed — they’re seeing the end of your journey with them, whether this is real or not, and that scares them more.

Maybe, instead of putting on a phony sunny disposition (which, as others have said, would be very transparent), just assure them you’re still in this for the long haul, however long it may be.

It’s obvious to me, looking at this from a distance, that your motivations to keep going, keep trying all the options, are very simple and very clear: You love The Child, your parents, Lisa, those around you, and wish to remain among them. There’s not a damn thing wrong with that (quite the opposite, in fact: that there is a powerful good). That’s what kept my mother going for YEARS against a death-sentence of a brain stem tumor: she wanted to make sure we (her boys: Dad, me, my brother) were going to be okay and were looked-after. And I see this same grim determination in you, Jay, even in this piece clearly dispatched from the back of the deep dark cave.

And, well, you just ain’t done living yet, as they say here in Texas. Too much yet to do, too much yet to see. I see that, too.

I’m not going to tell you to buck up, little trooper. I don’t think you even need to be told that. You’re doing what you need to do: talking to your family. Talking to the pshrink. Keeping on the medical path. Exploring options. You haven’t stopped. And that’s the important thing.

jay- you well know there’s positive ways to say negative things. like That kickstarter was Great! and i m lucky to be here TODAY! forgive me please. much love. take the daughter to disneyland?? xxx im sorry youre under such pressure now to say sequencing will do it. but fuck it.

Putting on a “happy face” for your loved ones, for a time, is a profound act and expression of your love for them. I deeply appreciate your standards for living a life of integrity and genuineness and not wanting to live a lie. But I think the larger truth that some “happy face” time will allow you to create some increased sense of peace or contentment for those close to you IS you living the larger truth of your life. It is you unselfishly putting others before you at a time when few of us could even begin to imagine being large enough, grown enough to do so. Your internal process, and the intellectual and emotional guideposts through which you have navigated your way through cancer horror is simply stunning and astonishing to me. I have learned so much from reading your blogs. So much that has inspired me to significant change in my own life. I can’t thank you enough for your candor.

{{{hugs}}} I can’t fathom how emotionally tough all this must be … you’re one of the strongest people I know, but that doesn’t mean you need to carry everything yourself… I hope you can find the balance of leaning on those who love you and building back your emotional core that has been so battered by all of this stress…

Jay,
You might also be considerate of recent publication in psychology that document, how we are influenced in our feelings by our actions. Acting like you are in love with a person, hugging, flirting, etc., actually moves your feelings in that direction. I firmly believe, the same is true in regards to depression. Putting on a happy face might actually make you feel differently. It’s worth a try. Time is all we have, might as well try to be as happy as we can…

Jay — What I want to tell you, what I would tell you if I were there, is that I owe you a debt because you wrote fiction that diverted me at particularly low points in my life. You don’t have to do anything else to have made my life better than it would have been. One of the things I saw when my mother had leukemia was that new treatments mean one enters new emotional terrain unexplored by humans before, places of hope and fear and puzzlement and bodily betrayal unknown to our forebears. I think there are, in the realm of oncology, emotions we scarcely can describe as they are so foreign and so new to humanity. I admire the way in which you have described, with honesty, what your long journey has been like.

The bottom line is that you’re allowed to be despondent, at least occasionally. Your main job at this point isn’t to make them feel better by putting on a false smiley face. Certainly your job and your responsibility to them is to never give up, to give it all you have and fight it every day and never throw in the towel while there is a shred of hope left.

While I am not a big fan of some of AA’s methods, I do think their “one day at a time” strategy is not a bad idea. Eat that elephant in smaller bites. Enjoy time with The Child, your dad, etc. Try not to spend so much time thinking of this as a contest with the cancer, because you know you probably won’t win that one. Don’t beat yourself up for what you do, or don’t do.

I think there is some evidence to demonstrate that smiling and pretending to feel happy can actually elevate your mood. If it helps, who cares if it didn’t start out to be genuine?

Also, I know you don’t seem to be a big fan of chemically altering yourself, understandably based on your expriences. But if you’re suffering why not accept some mood enhancement if you’re not already? I took Prozac during my 1st chemo experience and was glad I did. Why be more miserable than you have to?

Jay: Believe me, I know the feeling. Everything in my treatment went wrong, despite the rosy pronouncements by doctors: Chemo put me in the hospital with neutropenia. My chemo port clotted & almost killed me. Radiation made me fatigued for over 2.5 years. It’s pretty damned hard to hope in these circumstances. I’m a two-timer & I know your case is worse than mine. But try to think of a time when it WILL be over: when you can move from the Kingdom Of the Sick to the Kingdom Of the Well (ty, Susan Sontag). When I was going through it, I never thought I’d get out. But I did!!!

I am just a reader and a fan. I have little experience with cancer. I witnessed how pancreatic cancer consumed my father-in-law in a matter of months. I gave as much support to my wife as was posible. I saw despair and anguish in all involved. I can only say this to you Jay: You deserve our admiration and respect when, even from the depths of despair, you still manage to share your thoughts and feelings. You are tremendously generous and brave.

Dear Jay, not sure what to say here without sounding trite or condescending. But since you’re blogging this, I thought I would comment! Just do the best you can my friend. That is all any of us can do no matter what challenges we face. Don’t worry too much about what others do or say or think. Try to focus on the positive people and activities in your life. Ignore negativity. Love those who love you. Write if you can, but if not, do something else you enjoy. In my opinion, false hope is worse than no hope. Just do the best you can my friend. Unconditional love to you and Lisa and your family. – Michael

Well, I’m with you all the way on the Fuck Cancer front, but you may be stuck in another aspect of Puritanism. You don’t want to lie, because lying is bad and being truthful is good.
It ain’t necessarily so, Jay, and for those not poisoned at an early age by the Southern Baptists, the worldview looks different. I lie all the time to people who love me on the grounds that just because I’m up shit creek there is no reason to trouble others with my absence of a paddle.
Being truthful is not in itself an obviously ethical act, and the belief that it obviously is cannot be supported by rational analysis.
You might want to give some thought to why you believe this to be the case…

I’m halfway through adjuvant chemotherapy after surgery for Type II endometrial cancer (grade II, Stage IIIa, metastasised to an ovary) discovered three months ago, taking me from being a happy, healthy normal middle aged woman to a bald, sick, scared cancer victim almost overnight. I know what you mean about the cult of ‘optimism’, the pressure to ‘stay positive’ for other people’s sake. I’m not (yet) terminal, although the prognosis isn’t the best. But I still have a chance of ‘survival,’ although what that actually means I don’t really know. And as a fellow writer, I so understand the chemobrain writer’s block – I can barely get out of bed, nevermind write anything. So thank you for this – I can allow myself to despair now, there’s a kind of relief in letting it happen regardless of how it makes anyone else feel. So fuck the happy face, just let yourself grieve.